Diane's story

As a carrier of the BRCA 1 gene mutation, Diane talks about her experiences of breast and ovarian cancer and why she believes there needs to be more awareness within the Jewish community…

I’ve had a pretty tough time over the last few years.

I was first diagnosed with ovarian cancer back in 1998. When my doctor gave me the news he told me then that the tumour in my abdomen had probably been growing undetected for around 3 years.

After undergoing a full hysterectomy and chemotherapy, I underwent genetic testing, because there is a high prevalence of the BRCA1 and 2 gene mutations in people from an Ashkenazi Jewish background, like me. I was tested and found to carry the BRCA1 gene mutation. Looking back now, I can’t recall being given any sort of counselling. Everyone was really kind and supportive, but I definitely wasn’t given enough information about the gene or what it really meant to have the BRCA1 mutation. Most of the information I discovered came from the internet. There was also never any discussion with my doctors about the increased risk of breast cancer or the possibility of preventative surgery.

Breast cancer

I was diagnosed with breast cancer in 2009 and had a bilateral mastectomy and radiotherapy. Maybe if I’d known more about the gene I wouldn’t have gotten breast cancer - at the very least, I might have been tested for it a lot earlier.

It’s been seven years since my last cancer diagnosis, and I still see either a gynaecologist or breast cancer clinician every six weeks. The staff at Christies in Manchester have been great. They are always so approachable and have given me their mobile numbers in case I’m ever worried about anything.

Ashkenazi background

I’m from an Ashkenazi Jewish background and my father and his siblings have all tested positive for the gene. I’ve also got many aunts and cousins who either have the BRCA1 gene mutation, or who have had cancer or preventative surgery because of it.

In my experience, the Jewish community will not talk about the BRCA gene or cancer openly. There’s definitely not enough information about it, and I believe it’s not mentioned enough in the Jewish press. The silence directly contributes to a lack of knowledge about the gene. I think more awareness is needed.